Monthly Archives: September 2011

We’re ready for you to join!

Join Team Awesome!

There you go. This link should take you to our team page. From there you can click “Join Our Team”, then you’ll be on your way to awesomeness. We are really excited to do this, and the fact that you’ll be joining us will make this walk that much better. Of course, it’s our first time initiating something like this so we’re also a little nervous. Having you along for the ride will make things a little easier too. We even have someone doing some work on a t-shirt design for us! Once that’s all worked out I’ll get you all to email me your sizes so we can be awesome and look awesome.

We’ve set what we believe is a pretty reasonable goal of $1,000 for our team to raise. Of course, the more of you that join us the easier this will be to reach. I think it would be great if this turned out to be too conservative and we blow that number out of the water.

After Declan’s surgery the Neurosurgeon talked with us for a while about the device that Declan had implanted, a shunt. We talked about how great it is, and how many lives it has saved. We also talked about the fact that the technolgy really hasn’t changed much since it was invented about 50 years ago. He said that there is a lot of research going into finding new treatments for hydrocephalus, and hopefully someday even a cure. He said, “Wouldn’t it be great if he could just take a pill for this?” It would be great, and that’s why we’re doing this. I hope that someday people will no longer have to have brain surgery, in most cases multiple brain surgeries, for this condition. This will only happen if there are people researching new treatments, and this research will only happen if there is money to support it.

Thanks for doing something to make this happen.

As a reminder registration is $25. Kids 12 and under are free. The walk is on Sunday, 11/20. Check in is from 6:30 to 8:oo am at West Potomac Park in DC. The walk starts at 8:oo am. It will definitely be an early morning, but I’m sure the “crisp” November air will wake us right up. We’re thinking about getting a hotel room for the night nearby to avoid the early morning drive. If this is something you’d be interested in let us know and maybe we can all stay in the same place.

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Join Team Awesome!

We are going to participate in the Hydrocephalus Association National Capital 5K Run/WALK on Sunday, November 20. I was about to do a family registration for Kayleigh and I when I saw that they also have a “team” option. “Team” sounds like so much fun I thought I’d post this to see if anyone else would like to join us.

First, yes, we will be called Team Awesome. This is what Kayleigh and I call our family. As in, “What a great thing that just happened. Go Team Awesome!” *high five. Maybe we’ll even come up with some horrible t-shirt design and we can all look silly too. Also, yes, we really do call oursleves Team Awesome.

Second, no, we won’t be running. You crazy?!?! I mean, maybe some other time, after I’ve lost a lot of weight, gotten into much better shape, and find a way to overcome all of the (completely reasonable) excuses not to ever run unless I’m being chased by something terrifying, then maybe I’ll run. This time around though, you can be sure that we’ll be lollygagging around the back of the pack and trying to enjoy ourselves.

On a more serious note, we are doing this to raise awareness of hydrocephalus and to raise money for research. One or two of every 1,000 babies born every year will have hydrocephalus. Shunt surgeries cost over $2 billion per year in medical expenses, and less than $5 million in public and private money combined is devoted annually to hydrocephalus research. So, join us! Registration is $25 per person. (Kids 12 and under are free.) Let me know if you’re interested in becoming a member of Team Awesome, and I’ll let you know what you need to do to start helping us raise money.

Don’t have time? Don’t feel like spending a day in DC? Don’t worry because you know if you can’t be a Hydrocephalus Association National Capital 5K Walker, you can always be a Hydrocephalus Association National Capital 5K Walker Supporter! We’ll let you know when we’re ready for donations.

Thanks in advance…we’re counting on you.

 

Birth Defect

We got a very nice letter from the VA Department of Health yesterday. It was to let us know that they’d been notified that Declan has special needs, and that they have some programs available to help him. Reading through the information I found that he is is in a State database of children with birth defects.

I really have no idea if I will become used to this, but seeing the words “birth defect” really had an impact on me. Even now, typing them and “special needs” is on the hard side. I know that we are fortunate, and that so far Declan doesn’t seem to be having any develepmental problems, but nothing can change the fact that he has a birth defect. “Birth defect” will be something that he carries with him throughout his lifetime. It just seems kind of harsh if you know what I mean.

I am glad to have received the letter. We will almost certainly be taking advantage of some of the programs they were writing to tell us about. Life just loves slapping you with some reality every once in a while though, doesn’t it?

In other news, a few weeks ago Declan went for a follow up with his neurosurgeon. His shunt is doing what it does, and Declan isn’t having any problems with the fluid draining from his brain. The Doctor believes that the place where the fluid should be draining has a buildup of calcium and this is what caused the accumulation of fuid to begin with. It sounds like this is good news since this means it probably wasn’t one of the scarier things that can cause hydrocephalus.

There was “something” on the last MRI that the Doctor wants to keep an eye on. It could be “nothing”, but apparently is worth watching. Declan will be having another MRI in the next few months so they can take another look. I guess being on the edge of our seats wondering if “something” really is “something” or could just be “nothing”, is just part of being us now.

At least our kids are super cute! =)